Originally Posted by Neurochic

Emily

Please don't feel that it's "supposed to get worse". There's nothing to say that your CRPS will get worse than it is now. Contrary to lots of popular opinion CRPS is not a progressive condition. It can progress in some cases as you will have seen from some experiences here, but its not classed as a progressive medical condition. It is just as likely to improve with a suitable treatment and management regime and as you find you get better at coping especially as the distress and panic you are feeling just now reduces.

Also, don't feel you need to reply to my posts - I know that it is painful to type. I just want to put my thoughts out there for you to consider and use if they help.

From your posts, you seem to be in a lot of distress and this isn't a criticism of you. It's normal to feel this way. That doesn't mean you should suffer though. I would urge you to ask for referral to a psychologist, therapist or counsellor who has experience of assisting people either with pain conditions or with life changing diagnoses. Your partner (and that goes for most people's partners) doesn't have the objectivity, patience or the skills to listen and to help you in a situation like this. Inevitably, he has an emotional attachment to you and to his own issues. I spent a lot of time and effort trying to get my partner to read stuff and understand my diagnosis but the truth is, he just can't be inside my body feeling what I feel. At various stages over the past 5 years, I have had professional emotional and psychological support and it has been invaluable for me. Posting on a board is good but having a real person who will listen and is there just to help you without judging is desperately important.

What you are describing of trying to get your head round the potential for having this for life is also completely normal. It's an awful emotional roller coaster and its been the single worst experience of my life coming to terms with my pain, disability and unknown prognosis. It's irrelevant whether other people are worse off than you. Don't feel any guilt about that - its not a competition and your life is being seriously affected so you are entitled to feel as you do. I would say to you that it will take time to get through this. Don't try to get yourself 'sorted' in a day or a week or whatever. You can't put a timescale on this. Just take each day or hour or 5minute period at a time - whatever you need to get through this. Eventually you will be able to look back and see improvements in your situation and your coping - I promise you this will happen.

Your work situation sounds terribly tough. I don't have any answers for you. I thought I could carry on with my high pressure job and I struggled for as long as I could. I had 2 significant breakdowns before I had to give it up. My work was destroying my health and causing my symptoms to run out of control. You may well not have any choices, I understand that but you might want to at least think about whether there are any ways your job could be rearranged to make it easier for you to cope and to help your symptom control.

For me, that didn't work and I have lost a lifetime's career that I loved not to mention all of the benefits that went with that. Can you get input from a physiotherapist or occupational therapist to see if there are any workplace interventions or equipment that could help you? Instead of typing could you use voice recognition software and then only physically type to make corrections etc? I hesitate to ask this but could your partner do more or try to bring more cash into the family home at this time to take the pressure off you a bit?

I suggested that you look at the Dutch Professional Guidance (for example) because it will give you the knowledge to deal more effectively with your various doctors. It will allow you to ask for the various medications that are most likely to assist you based on world leading professional guidance that is underpinned by evidence. That is very hard for physicians to deny or refuse. It gives you power. When you are desperate and emotional and in pain it is too easy to come over as if you are drug seeking or unbalanced. I have been in situations where i have been ranting and must have come across as a total crazy when i have seen my doctor! It was only because i was distressed and in agony and at the time I thought I was entirely rational! This makes any doctor more reluctant to prescribe because they are thinking about their own liability.

I was utterly frustrated by my GP knowing nothing about my condition but I was fortunate to have a Pain Consultant who was clued up. Unfortunately I lost him fairly quickly in my CRPS journey due to his terminal illness. My GP respected that I had done my research from good quality sources so when I asked for referrals for therapies, emotional support or medication he was very supportive. My subsequent pain consultant was nowhere near as good as the first and was disinterested. He felt there was nothing else the Pain Management Service could offer me so I now work with my GP. We have developed a level of trust and that has proved invaluable. However, it works because I educated myself at the outset, I keep informed and he trusts that I am working from reliable medical sources. It has proved virtually impossible where I live to get any consultants of any specialism who are experienced in dealing with my 'cold' CRPS presentation with severe movement disorder which is why I had to go abroad to find experts.

Most CRPS patients find that they have to manage the doctors rather than the doctors getting together and collectively managing the patient. If you don't feel up to doing that yourself, could you ask a friend to help you. Get them to go to the medical appointments with you and have them help you do the research into the different medication and other therapies that may help. I know you live in a difficult area where everyone is perceived to be seeking medication to sell but there's no reason why you shouldn't be able to show your doctors that you are different with your willingness to help yourself and your knowledge of the condition and the treatment options. Be honest with your PCP, anaesthetist and Pain Consultant about the problem that they all seem to be relying on the others for guidance so you feel that you are falling between them all and see if they will agree that one of them will be the lead clinician (obviously try and make that the one you think will be best for you).

I wish there was something more useful I could do to help because i can feel your pain. I recognise the place you are in and I know how desperate it feels. It will get better, you will find a way through this. I'm over 5 years down the line and its not as bad. It's not because I'm 'better', its just that my condition is better managed and psychologically I'm coping better.

Originally Posted by Neurochic

That is kind of you Loretta. I am glad that you think what I wrote in that post is also of some use to you. One of the bothersome things is the sheer amount of information about CRPS on the internet that is inaccurate or has no evidence to support it. It can be really difficult to tell the conjecture and baseless assumptions from the factual information that has an evidence base behind it or even just a credible hypothesis underlying it. When incorrect information is continually repeated it sometimes takes on a life and (false) air of authority of its own.

When people in desperate positions are faced with medical professionals who don't know much, and a condition that is genuinely so poorly understood by medical science, its so easy to start looking and not necessarily to realise that there is a lot of stuff out there that isn't correct. Sometimes, I think that when desperation and pain is present, it clouds judgement and its really easy to 'want' to believe things even if you kinda know deep down that they don't stack up - I am sure we've all been there at some point! That's why i think it's so important to try and read things like the various sets of treatment guidlines, case reports and published clinical trial reports. It gives you a good grounding and its a bit easier to spot or challenge the stuff that doesn't add up, is out of date or just plain wrong. It's shocking too that the knowledge of so many doctors is out of date or inaccurate and the only way to know that or to be able to challenge their opinions or advice is to have credible information.

Somehow, for me, i feel that the more I know and understand about the up to date medical science and treatments, the more control I feel I have. A condition like CRPS robs you of the control you previously had over your body, life, relationships, career etc. Anything you can do to re-inject a sense of control back into your life and minimise the feeling that you are in a kind of helpless free-fall is a huge benefit. It's also a condition where I think the more you can feel you are 'doing' do to help yourself, the better the chance you give yourself of coping better with your physical and emotional symptoms. It's incredibly hard to do all that, I am not under any illusions and it takes time, but even the tiny positives are worth their weight in gold when you have this diagnosis.